Dying As a Story

After nearly one academic year of participating in this hospice program, there is one event that stands out to me the most. It was the first patient assigned to me that lived with her husband and was in the late stages of Parkinson’s. She could not speak nor move, however, she was aware of her surroundings. I was there for her only but since she could not speak, I ended up speaking to her husband more. As more weeks went by I realized I was visiting him more so than visiting her. Additionally, it seemed as if she was very uncomfortable when I was there. Her shakes would get worse and she would always try to be communicating something with her nurse. I tried to understand why she was so uncomfortable with my presence by asking questions to her husband about her life. She was an Italian immigrant who was a stay-at-home mom, and hosted a lot guests at her house. So, I made the connection that she was probably embarrassed to receive a guest when she is in this condition. After further inquiry, I found out that her three children visit several times throughout the week. Taking all of this into consideration, I felt that it was best for me to be assigned to another patient. I felt that I was taking up space where I shouldn’t. I constantly felt that I was using this woman for my own benefit of the program. She was not lonely nor had the risk of dying without a friend. There were so many people around her who loved her.

After further reflection on this experience, I was reminded of a quote that was said in Being Mortal by Atul Gawande, “In the end, people don’t view their life as merely the average of all its moments — which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens.” When I first met this patient, I was overwhelmed with emotion once the visit was over. It was so devastating to see a person come to this point of their life. Personally, I have never experienced death or someone coming close to death. So, this first visit was distressing for me. However, I forced myself to continue and found that as I learned more about her, the less I felt sad and the more I felt at peace. This woman lived. She was raised in Italy, traveled across the world, fell in love, had and raised a family, and now she was experiencing the last living moment everyone does: Death.

All in all, this experience has taught me many things. Do not take up another person’s space unless they invite you in it. Life experiences give it meaning and make us human however, dying is a part of those experiences.